A Report

National Trust For the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple

Disabilities, (Ministry of Social Justice & Empowerment) 9th Floor, Jeevan Prakash Building, Kasturba Gandhi Marg, New Delhi-1 10001

Tel : 43520861, 43520863 Fax : 23731648 Email: nationaltrust@nic.in

Website: www.nationaltrust.org.in

Transcribe and Documentation by Ms. Anjlee Agarwal

Knowledge Workshop 11 September 2008

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Programme Schedule – Knowledge Workshop

Vishwa Yuvak Kendra

11.09.2008

Time Particulars Page

10.00 a.m. to 10.30 a.m. 1. Inauguration

2. Lighting the Lamp

3. Prayer

4. Welcome Address by Deputy Director (Admn.), National Trust.

5. Keynote Address:- Dr. Guruduth Banawar, IBM, Director India Research Lab/Accessibility

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10.30 a.m. to 11.30 a.m. UN Convention – Legal Capacity :

- Prof. Amita Dhanda, Nalsar University of Law, Hyderabad - Shri Gambor Gafos

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11.30 a.m. to 11.45 a.m. Tea

11.45 a.m to 1.30 p.m. Assessments :

1. Portage: Dr. Tehal Kohli, Indian National Portage Association, Chandigarh.

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2. Autism: Dr. Kavita Arora, Sitaram Bhartia Institute of Science, New Delhi.

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3. Autism Tool: Dr. Saroj Arya, NIMH, Secunderabad. 22

4. The COM- DEALL Trust : Dr. Pratibha Karanth 28

1.30 p.m. to 2.30 p.m. Lunch

2.30 p.m. to 3.30 p.m. Fund Raising: Maj. General (Retd.) Surat Sandhu 31

3.30 p.m. to 4.30 p.m. New Technology for PWDs - Shri Anil Joshi, IBM - Dr. Ashish Verma, IBM - Dr. Om Deshmukh, IBM - Mr. Nitendra Rajput, IBM

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4.30 p.m. to 4.45 p.m.

Valedictory Remarks

Mrs. Poonam Natrajan Chairperson, National Trust

Shri Atul Prasad, JS&CEO, National Trust.

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4.45 p.m. Tea

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1. Inauguration

Mr. Mohanti, Deputy Director (Planning), National Trust started with the inaugural address & greetings and welcomed all the dignitaries on the dais by presenting bouquets; starting with Madam Poonam Natrajan, Chairperson, National Trust; Mr. Atul Prasad, J. S. & C.E.O, National Trust; followed by speakers of the Knowledge workshop i.e. Dr. Guruduth Banawar, IBM, Director India Research Lab/Accessibility; Dr. Tehal Kohli; Dr. Pratibha Karanth; Dr. Saroj Arya; Mr. Gambor Gafos; Shri Anil Joshi, IBM and Prof. Amita Dhanda.

2. Lighting the Lamp

Inaugural address was followed by lighting of the lamp by all the dignitaries to formally open the Knowledge Workshop.

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3. Prayer- Children and adults of Manovikas NGO, Delhi presented a prayer- “Hey Ishwar humko hamari manjilo tak le kar jana; hum kisi kabil nahin humko kisi kabil banana”.

An extremely inspiring prayer complimenting the “Knowledge workshop” set the ball rolling for the sessions for the day.

4. Welcome Address by Deputy Director (Admn.), National Trust –

Mr. Rajneesh Sharma gave away the welcome address on behalf of the National Trust by welcoming Chairperson National Trust, JS & CEO, National Trust, Resource Persons and other dignitaries on the dias and the august gathering. He gave a brief introduction to the title of the workshop. He complimented Chairperson, National Trust who suggested naming it “Knowledge” workshop, in which deliberation on sharing of information and knowledge will be made based on the different aspects of papers presented and resource persons invited.

He there by introduced all the presenters, beginning with Dr. Guruduth Banawar, the key note speaker of the day:

“ Dr. Banawar is a Ph.D. in Computer Science from University of Utah and is currently Director of IBM’s India Research Laborarty (IRL). He presented 40 papers and patented 25 items.”

Introduction of Prof. Amita Dhanda

“She is a professor of Law at National Academy of legal studies and research, University of Law Hyderabad. Dr. Dhanda was actively involved with the drafting of the Convention on the Rights of Persons with Disabilities and has been associated with disability research and reforms initiatives in the country for the last 25 years. She will speak on aspirations and PwD’s and their parents, social discrimination, legal capacity and UN Convention.”

Introduction of Shri Gambor Gafos

“Gabor Gambos, a Mental Health & Human Rights Scholar, is an activist from Hungary. He is a former theoretical physicist and one- of the 51 leading human rights defenders in the World. He has chaired both the Hungarian and the European Network of Users and Survivors of Psychiatry. He has been actively involved with the drafting of the Convention on the Rights of Persons with Disabilities. He will speak on UN Convention Legal Capacity.”

Introduction of Dr. Tehal Kohli

“Dr. Tehal Kohli is retired Prof. & Chaiperson of EMERITUS Fellow & Founder President of Indian National Portage Association. She has 45 yrs. of teaching experience. She has published 105 papers and attended 150 National/International conferences. Dr. Kohli has won many awards. She will speak about Portage.”

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Introduction of Dr. Kavita Arora

“Dr. Kavita Arora is MBBS, MD (Psychiatry), CCST (UK). Currently she is working as Consultant Child and Adolescent Psychiatrist at three centres in Delhi. She focuses on preventive aspects of mental wellbeing, developing much needed services for children and young people and creating awareness in society. She will speak about Autism.”

Introduction of Dr. Saroi Arya

“Dr. Saroi Arya is retired Associate Professor & Head of NIMH Secunderabad. She has 30 yrs. teaching experience at PG & M.Phil level in Psychology. She has published 25 articles in National and International Journals and participated in various National & International Conferences and Seminars. She has won many awards. She will speak about Autism tool.”

Introduction of Dr. Prathibha Karanth

”She is M.Sc., Pill in Speech and Hearing & the first speech language pathologists in the country. She is a clinician, researcher and teacher. She has spanned 30 yrs. in National Institutions. She has guided over 5 doctoral and around ISO masters dissertations and 4 has books & over 50 papers in national & international journals. She will speak on the COM-DEALL Trust.”

Introduction of Major General (Retd.) Surat Sandhu

“Major General Surat Sandhu worked in the Indian Army for 34 years. He was CEO Help Age India, a national level NGO. He is a Management and Senior Fundraising Consultant to various organizations and also the Vice Patron of the Memorial Gates Trust in London. He is an advisor and Board Member of various organizations. He will speak on Fund Raising.”

After the introduction of all the speakers, the workshop began with the keynote address. Keynote Address Dr. Guruduth Banawar introduced role of IBM Research Lab/Accessibility in technology: - IBM is the best known and certainly the largest IT Corporate

history in the world. It introduced world’s fastest super computers and brings in new improved speech software, key aspect of accessibility technology.

- IBM research is a division of IBM, has 8 research labs and India happens to be one of them with its lab based at Delhi with highly qualified researchers.

IBM’s position on Accessibility in general - Accessibility started as philanthropic effort for many but for

IBM it evolved social transformation effort to enabled PwDs. - Aging is experienced by everyone and sensory modes

become limited in abilities. IBM developed technology for this group.

- Disability definitions taken by IBM are for language disability, cognitive and even temporary disabilities. - Broad definition of these groups includes 20% i.e. 500 million people. - IBM allows disabled persons to live a full life. - Vision of IBM beside issue of compliance in the world of accessibility like UNCRPD and as well as

Indian Government, is to have social commitment regardless of disability and aging. - IBM India pioneered policies and technology for over 90 years and hired the first person with disability

in 1914, thereby making a mark as equal opportunity provider so as to be part of the working culture and transformation.

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In India tailoring information to enhance individual effectiveness, IBM considers interaction with technologies i.e. accessing technology through multi modal interface and not only through vision interface. Some examples are: - Tactile touch based and gesture based interfaces like moving eyes in particular fashion etc. providing

right kind of education initiatives, right kind of technology support for diverse PwDs. - We also provide education and training and right kind of technological support and learning. In

collaboration with Spastic Society of India to enhance accessibility for PwDs. “Kids Smart” programme is one such initiative.

- IBM Human Accessibility, first programme in India provide solution services and technologies. - IBM is working closely with government agencies such as National Trust. - Bridging the digital divide which is “have and have not’s” for technologies.

A few words about my own organization and the new kinds of advances we have made to enhance accessibility:

• IBM has been working more than 90 years almost a decade and hired the first PwD in 1914. • Innovations being brought to society, making IT more accessible. We can think of three different

technologies. For example browsing the web easily in usual PC, you can down and install software, you can access the web site much easily to zoom in and zoom out the key events with speech interface and easy web browsing experience to help vision impaired persons.

• Interaction mechanisms that are for the differently able persons for example Speech multi-modal and tactile kind of interfaces.

• The third kind is making these kinds of advance technologies available through mobile phones. Few examples of three important projects are:

1. Spoken Web Project- Some examples are Hindi Speech Language which converts Hindi spoken language into text in Real Time. We created Indian English Text to Speech Synthesis to be understandable in Indian English accent, which was not available before.

2. Web Enable Tool for assessing and improving the spoken English ability of an individual and evaluates spoken English/Grammar of a person and provide training for improving spoken English.

3. Bridging Digital Divide- 83% of world wide population does not have access to a personal computer, therefore now mobile phones should be able to access the mobile web through telecommunication network. People, who have low level of literacy and simply have the ability to use the mobile phones, can use it for legal, health, social and other services.

Spoken Websites: • You can perform transactions on this spoken website. For e.g. a plumber can create a spoken website

for using his services, therefore some one can create an appointment and this person can get access to all the appointments and perform the service. Hence, mobile phone can serve the same web browser instead of using a PC/laptop.

• Persons with vision impairment can use such services significantly. This new project is being run as pilot project with Blind Relief Association and National Association for the Blind; to access those web sites which they were unable to access earlier.

IBM India has been recognized by the following awards:

- Best Employer for PwDs and won Shell Helen Keller Award in 2006, for gainful employment of PwDs and in the year 2007 for providing cost-effective technologies for PwDs.

Closing remarks: Mr. Banawar presented the vision of IBM in his concluding remarks, which are as follows: • Enhance human capabilities • IBM is very happy and proud to partner with National Trust as “Knowledge Partner”.

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SESSIONS

UN Convention – Legal Capacity

I. The first session of the Knowledge Workshop on UN Convention – Legal Capacity was jointly made by Prof. Amita Dhanda, Nalsar University of Law, Hyderabad and Shri Gambor Gafos.

Shri Gambor Gafos began the power presentation “The Promise of CRPD” with a self introduction and his colleague Prof. Dhanda.

“I am coming from Hungary, which is a far away country, and work in the field of disabilities share more similarities than differences I would say. I came to India in the month of June and during this short period I have the opportunity to meet some of you. I am a person with disability and I have been diagnosed with major mental disorder and living in this condition for more than 30 years now”.

In case you do not know Prof. Dhanda, I request her to introduce herself.

“I am Amita Dhanda and teaches in Law School in Hyderabad and reason why we are making this presentation jointly on the Convention on rights of persons with disabilities is because we work together as a team and as a part of deliberation in the negotiations for the convention.”

Presentation: The time is to begin this lecture is the Promise of CRPD, which came into force in this year in May. And also we need to understand that no convention no, no international law can make the change. The change can be made only if people advocate for the change.

Slide1. The promise from the CRPD comes not from the abstract understanding of International human rights law or disabilities studies or what ever but the promises comes from “every day unique experiences” of persons with disabilities. We need to understand that any international convention will not bring the change, until “the people will not bring the change”.

Slide 2. Are the hopes dreams and aspirations of PwDs are different from non-disabled persons? What do we PwDs want from life – you can make a list of these things. We want decent life, we want that our dignity to be respected, we want quality education and standard of living, we want access to good health care that doesn’t discriminate us; we want to play with other children, similar children and also with different children, and you can continue. We do not want to be excluded in area. In order to enable ourselves, every day across the globe PwDs want to fulfill their hopes, dreams and aspirations on equal level with others.

What do parents want? I think parents want to be good parents, and I have never met parents who want to be bad parents. I found India is similar to my country in terms of lack of support to parents, which is not available to PwDs and families. Our society presumes that everyone knows how to be good parents. How

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to run my parenting in a satisfying way and more importantly for my child, when they become adults and that too with intellectual, mental retardation or mental health problem, multiple and learning disabilities is what bothers the parents.

Slide 3. Now the question is how persons with such severe do / multiple disabilities want something different and or they aspire for the same social perceptions, dreams and hopes? Do I as a parent need to be satisfied with the lesser quality dream, hopes and aspirations about my child’s future and present, if my child has a disability – intellectual disability in particular.

The next question is if PwDs themselves wants something different from in particular persons with Autism, mental retardation, multiple disabilities, cerebral palsy wants different things from other group of people – non disabled or people with physical disabilities, I think the only way to answer this question is to ask them and not only to ask them because if somebody had lived a life in which he has got used to past , it may make it very difficult for us sometimes to speak and to share what we feel & think. We need to empower the PwDs to answer the question. Slide 4. What are the barriers in the society to fulfill their aspirations? There could be two pronged approach. First of all, the kind of barriers PwDs faces is attitudinal barriers in the society are the largest barriers. If I belong to any disability group for example- Down’s syndrome; no body believes that he/she can learn Mathematics. There are few examples from each country where people have excelled. “One can easily do” is a phrase which many educational systems from various countries do not believe.

I am treated differently in different spheres of life for example marriage, legal contract, employment, going to school of my choice etc. is impossible if I am placed under guardianship. I am not allowed to do that even if I am capable of doing that. Some times PwDs faces barrier, for example I found that my family was also a barrier. They wanted to protect me, which is required as I wanted protection and security. But I do not want over protection. In such situation, parents have the best intentions to protect you, but this does not allow you to become adults!

Slide 5.

• The incurable conditions of impairments were seen as disabilities.

• PwDs never identified with the medical model of disabilities. Because the mere fact that I am a blind person shall not prevent me from education and employment; accessing information and other fields of life.

• If I am wheelchair user, I should not be left out from accessing public facilities and services of the

environment like other does. • If I am person with mental illness and my employer provides reasonable accommodation in the

terms of my employment, for instance introducing flexible working hours and similar things; I can be the most productive employee.

• So impairment itself does not result in disability. It is caused by the fact that impairment des not find a proper response from the society. The society instead of including me with my needs, with my

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ways of doing things which may be different from mainstream society creates additional barriers. Barriers in the environment instead of including me, excludes me as a PwD from equal participation. Again I speak on my behalf and barriers are often also created in the family.

Slide 6. Prof.Amita Dhanda began with her power point presentation complimenting Mr. Gafos slide on production of disability.

We need to be working out on the following:

• Assert that I have right to dream • Let’s look inwards and also look around us • Remember the prayer in the morning “hum to

kisi kabil nahin”; if a competent person talks about something like this, we say that he is being modest and is full of humility. But if a PwDs talks like this, you are in effect somewhere reinforcing what everybody anyway thinks about you that you are “incompetent”.

• The point is that the whole question of empowerment begins in the littlest and the biggest things we do. It is in every kind of decisions and in every small big way from the family.

• I think when we talk about attitudinal barriers, attitudes are not just there! Attitudes are just right in here (in the heart). Attitudes can change the same but attitudes are “right in the person”.

• It is the sensitization of the community and intra discipline community and PwDs is required. • Attitudes are not just about others, attitudes are about “ours”/ as much about “mine”. What role can law play?

• Laws once made, are meant to be enforced and implemented. • Attitudes are incorporated in the law, any kind of empowerment of PwDs cannot happen without

dismantling these attitudes from the laws. I have no such illusions that bring the law and I will change the world. If there are barriers are there in the law than empowerment can come from the law. Empowerment is where you are, not just letting me do the right thing, it’s also letting me doing the wrong thing and listening to me before you decide what I want and what I don’t want.

• If you give me the chance to participate the end result would be empowerment. But I can’t fully participate if you see me as a disempowered person.

• Legislation and attitudes feed into each other. • If there are barriers in the law, then there has to be empowerment with in the law. It is important that the

law should not be preventing the dream “to find a space for your own self”. Whether the law can actually obtain and achieve the dream, it can at least facilitate it. The first role it can play is that it should stop playing negative role.

Slide 7.

Why should I bother to bring about national Trust Act in harmony with International Law i.e. UNCRPD. Because all the work we are doing in terms of empowerment, all the various experiments we are launching out; is to see that here is the constituency who has to be seen as much as the constituency as the rest of the populace. The law should be encouraging and facilitating that. We want to use it as a positive force. UNCRPD speaks the language of dreams, hopes and aspirations.

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Slide 8.

The convention is providing for all sorts of hopes dreams and aspirations. As once we have signed and ratified this we are obligatory to fulfill. If something can help us in getting what we want, then why should we not use it because it happens to come in as international law? It has all the pressure of international community that comes behind the agreement we have signed. If we are able to change what is right and wrong in the policy, it is the pressure we should take.

Slide 9.

Education, employment, family life, etc. is required to get connected to the society:

- There is something there which can help us obtain what we want and in that slight extent that connection needs to be approached.

- Other thing is that education/employment etc. is geared towards capacity building of PwDs as education is capability development.

- Why we give importance to family life as this is our way to get connected to the world.

- Social security and responsibility cannot be achieved unless capacity and capability is given. - Evidently all of these things are important to make me a fully functional human being.

The negative barriers we spoke about compliments to what we say now:

• We want this person’s capability to develop but actually his capacity is questionable. • Person’s contractual capacity is questionable as he might get exploited; he might get cheated, or might

get into unwise contract. For example if we get her to marry, she might not be able to take of the responsibility.

• Somewhere what he is happening we are having double standards/speak at play. You really can’t seek in terms of development of capabilities without an unequivocal acceptance of the fact that everybody has the capacity.

• It has been understood that all the convention is promising cannot be obtained without accepting that all PwDs are equal persons before the law, that all PwDs have the capacity to take decisions for themselves (with /without support).

• If the legal capacity of persons with Autism, intellectual disabilities and psycho-social disability legal capacity is questioned, then evidently this collapses.

• If there legal capacity is questioned, this becomes only so much philanthropy/ this becomes only so much time pass. It is not serious enterprise on inclusion and it is not serious enterprise on inclusion empowerment.

• If we are serious about empowerment, if we are serious about what will happen to our children after us which prompted National Trust Act. That opportunity is evidently is there in National Trust.

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Slide 10.

How can we minimize the chance that the abuse and exploitation will really reduce and no proper protection is provided or no consequence will happen if I am abused or exploited?

How these contradictory goals can can be achieved at the same time. This can happen only if the legal capacity of the person / even capacity of the most severe disabilities are recognized by the law. As soon as you deprive the person of his legal capacity the person is not seen as a person before the law. He /she are seen as a disabled person and not equal to other persons before the law. When the person’s legal capacity is retained, then the person has an equal access to all those rights which the non – disabled persons have. CRPD has the answers to all these problems.

Slide 11.

CRPD says that all PwDs are equal before the law, all of them have the capacity to act, but PwDs is kept at the centre and around that PwDs what ever kind of support the person requires to be able to live a complete life that support is that persons right; and you are doing that because I am a full person before the law.

When I am a capable person but I need help for exercising that support. Now how does it differ from guardianship? The point is guardianship as a system comes into place as the incapacity of the PwD! In this case PwD is a passive recipient of what the guardianship in his best interest thinks, the person requires. The difference between guardianship and supported decision making is fundamentally only this that (for example) what I think my friend with vision impairment would want to eat and not what he wanted to eat!!

When we speak in terms of full legal capacity with support, recognizing the fact that yes you may need assistance to exercise that capacity but that’s no reason that you will not allow me to climb steps if I am scared of heights. You may hold my hand and provide support when I climb steps; I am not saying don’t let me climb steps.

In India support network is not clearly understood. Support networks could be simply staying in clustered community houses and what the person wants to do in his spare time with very complex issues such as what to do with the million dollars which person has. We all consult our family, friends, relatives etc. while taking a decision. Similarly PwDs will take similar steps and will need support in reaching some of their personal decisions.

Slide 12.

In this paradigm shift, it is not going to be an easy task as it requires lot of commitments and patience to reach the goal. Both the speakers concluded the presentation by stating that: Every Civil Society Organization, DPO and PwDs takes up this ideal slogan “Nothing about us, without us”.

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Assessments

1. Portage- Dr. Tehal Kohli, Indian National Portage Association, Chandigarh

Slide1. Dr. Trehan began with her presentation by introducing Portage training as E. I. Services.

Slide 2.

She introduced different types of Assessment for planning and implementing intervention.

Part- I is Formal Assessment

DEFINITION: use of a standardized assessment instrument by home visitors to measure each enrolled child’s developmental functioning level.

PURPOSE: a formal assessment provides your program with information to:

1. Provide pre and post program developmental functioning scores to aid in the program

2. Provide a profile of each child’s developmental strengths and needs in all developmental domains including motor, self-help, socialization, cognition and language.

3. Provide home visitors and parents with information about skills and activities each child can perform to aid in individualized curriculum planning.

Slide 3.

Part II is Informal Assessment

DEFINITION: observation of a child interacting with the environment (materials, peers. Siblings, adults. Etc.) to determine interaction patterns and learning styles.

PURPOSE: an informal assessment provides program information to:

Help parents and home visitors plan and implement activities that are appropriate for the child's specific strengths and needs.

Provide additional information on a specific child's learning styles and interaction patterns

Slide 4. Part III is Curriculum Assessment

DEFINITION: to determine what skills a child can perform and determine what short range and weekly goals are appropriate for instruction.

PURPOSE: a curriculum assessment provides program information to:

Provide an individualized program for each child enrolled ensuring that the child is always involved in developmentally appropriate tasks.

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Slide 5.

Thereafter she explained purpose of Assessment, which comprise of Screening, Diagnosis, Placement/eligibility, Programme Planning and Evaluation.

Slide 6.

She explained curriculum based assessment- as a form of assessment that uses the teaching items themselves as the assessment content.

Slide 7.

Characteristics of Curriculum based assessment was given in this slide as it includes all major developmental domains, assists individualized intervention planning, provides for simple tracking of child’s progress, encourages normalcy, begins with simple skills and which gradually become more complex.

Slide 8.

She emphasized that education for pre-school children with mental retardation can find education in special institutions, inclusive education models and education through home and community involvement.

Slide 9.

Early Intervention (EI) she highlighted is needed for almost 10% of child population suffering with one disability or other. It is needed for them in the form of “help/Guide”. EI services include: 1. Compensatory services, 2. Remedial services, 3. Prevention Services, 4. Training those who are trainable/educable 5. Protecting their legal rights, 6. Caring for those who cannot look after themselves Slide 10.

• Portage is an international early intervention pack for children with developmental delays. This training pack is used in over 130 countries. Portage was started I USA as a part of “head start” programme in the 70s.

• The major focus of the portage is to transfer the early stimulation skills to parents of children with special needs.

Unique features:

1. Flexibility 2. Cost effectiveness 3. User-friendly curriculum for both literate/illiterate whether poor or rich 4. Available in different languages

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Slide 11.

Portage derived its name from a small town in Wisconsin (U.S.A) where the first home-teaching scheme began in 1969 – a place which was portage or a crossover from body of water to land. This is how it is used as a ‘crossover or bridge’ – a way of transferring knowledge and skills from professionals to para-professionals and to non-professionals. It is also known as portage because the services are carried out to the door-steps of the needy. The term portage is now being used as i) a concept, ii) an educational construct and iii) an educational service. The classic portage model was developed by David Shearer & Marsha Shearer in 1972. It has been adapted and tried in India under various models by the president of INPA Prof. Tehal Kohli and her team of workers since 1980. It is continually being adapted as and when required as the model has lot of scope for flexibility

Slide 12.

We wish to emphasize several important points about the portage model. • First, the intervention is designed to maintain the primary responsibility for a targeted child’s care and

nurturing with the child’s parents and family. Therefore, mothers and major care givers are approached with the expectancy that they are willing and able to raise and nurture their own children, inspite of an agency’s or society’s perceptions.

• Second, the model calls for a home interventionist to visit the home weekly but not to provide services directly to the child. Instead, this approach focuses on the parents and family, helping them to acquire and enhance their child rearing skills and to improve their knowledge regarding infant and child developmental, nutritional and health care needs. This approach allows the parents to provide the child with the enriched learning environment that is constant and extends beyond the boundaries of the intervention itself.

• Third, the systematic intervention approach provides daily feedback to the parents and weekly to the intervention staff. This reinforcement is essential to maximizing the likelihood of success for parents, families and children.”

Shearer, D.E. & Shearer, D.L. (1994), United States

Slide 13. ESSENTIAL FEATURES

It is non-formal, cost effective pre-school intervention programme. It is home-based. It can be centre or institution based also. Weekly home-visits by home-advisers (ha) are required. Weekly teaching activities are to be followed by the parents. Daily teaching and recording is done by the parents. Monitoring of the scheme is done by the management team of senior personnel.

Slide 14.

What are the aims of portage services?

• Portage services aims at : • Identifying children at risk of developmental delays/learning disabilities/mental retardation. • Maintaining a child's current skills and strengths. • Helping the child acquire new developmental skills. • Improving the child's and family’s quality of life. • Arranging referral services for the children wherever required. • Motivating awakening and mobilizing the care givers • Educating and training parents including those of the slum areas and illiterate parents for educating the

children. • Utilizing existing community resources and infrastructure at pre-school level.

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Slide 15.

PORTAGE-MATERIAL

Portage kit consisting of: • Portage check list by Bluma Et Al. (1976) which lists sequential behaviors from birth to six years of life. • Curriculum cards to develop and observe each of the behaviors on the checklist. Each card includes

behavior description of the skill and suggests material and curriculum ideas for teaching it. • Activity charts. Other additional materials consist of the following: • Performa for evaluation of the programme. • Recording of reactions of mothers towards portage training. • Indian adaption of the portage kit (1 to 6 years) and the basic training course –in Hindi & Punjabi. • Toys prepared out of waste. • Skill based training material as per situation. • Audio-visual aids. • Language enrichment material. • Cognitive development material. • Various types of psychological tests and equipment. Slide 16-24 comprised of pictures of the Portage material, which has been used by Dr. Tehal and her team for assessment.

Slide 25.

A beautiful picture presentation on teaching activities into daily routines was shown by Dr. Tehal.

Slide 26.

Who can carry out / implement portage services? • Portage services can be carried out/implemented by a team of professionals, para-professionals or

non-professionals. • Professionals • Early childhood educators and health planners. • Administrators. • Policy makers. • Early childhood educators. • Psychologists. • Therapists. • Teacher educators. • Researchers. Para-professionals • In charge of day care centers, crèches. • Pre-school teachers in anganwadis, balwadis and grass root level workers.

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• Lady health visitors. Non-professionals • Family members such as parents, grand parents, siblings. • Volunteers. • Social workers. • Individuals interested in early intervention e.g. mahilla mandal leaders. Slide 27.

Following are the advantages of portage service: • Is cost effective. • Utilizes community's resources rather than highly qualified staff. • Stresses upon parental involvement as natural therapists. Also parents as consumers feel more

involved. • Follows a highly structured design yet simple in its implementation. • Stresses upon systematic, step- by- step skill training. • Focuses on priority area of national policy of education in India. • Can be modified according to the specific needs. • Robustness of the material and processes. • International, cross-cultural research and development base. • Results in increased I.Q. and cognitive abilities. • Helps in motor development, language enrichment, socio-emotional balances and acquisition of better

self-help skills. • Reduces possibilities of developing secondary disabilities and behavior problems

Slide 28. Few more advantages are: • Utilizes communities’ existing resources • Stresses upon parents as natural resource agents and consumers • Highly structured training but simple in implementation • Individualized instruction • Partnership of professionals, para- and non- professionals possible • Para- and non-professionals are equally effective pre-school therapists • Suited to even rural/ slum dwellers and illiterates • Systematic step-by-step skill-by-skill training. Hence immediate feedback • Helps in achieving points 15 and 16 of 20 points programmed (Fla & Ecce) Slide 29.

• Can modify according to specific needs • Gains have been empirically confirmed in different models and under various conditions • Can be extended to children with other special needs to regular schools and to adults • Majority have joined regular schools after early intervention • Portage system satisfies all the latest trends in early intervention services Slide 30.

WHAT MAKES PORTAGE UNIQUE • Partnership with families. • Adaptability of program, based on field research. • Continually seeking excellence. • Involvement of mothers / women. • Focus on development.

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• Short and long-term programmes / field experiences. • Multi-agency approach. • Multi-disciplinary approach. • Parent involvement in planning, designing and implementing. Slide 31.

International Portage Association Conferences were held in the world wide countries such as:

• Winchester, United Kingdom 1986 • Tokyo, Japan 1988 • Madison, United States1990 • Ocho Rios, Jamaica 1992 • New Delhi, India 1994 • Canterbury, United Kingdom 1996 • Tokyo, Japan 1998 • Birmingham, United States 2000 • Cyprus 2002 • Netherlands 2008

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2. Autism: Dr. Kavita Arora, Sitarma Bhartia Institute of Science, New Delhi. A well structures presentation comprising of visuals, movies files and illustrations was initiated by Dr. Kavita who beautifully explained Autism Spectrum Disorder (ASD) and its essence. She emphasized few aspects of how to identify and assess ASD.

Slide 2.

Worldwide there are studies in some of the western developed world, which put the figures very varied figures at 1 in 160, this is more recent from Australia. The US says about 1: 500. In India do not yet have nation wide epidemiology study to tell us what the prevalence is. If the population of Delhi for example according to 2001 census is 13.8 million, that means there are 27,600 affected people in Delhi alone.

Slide 3.

Difficulty is in three domains:

1. Social Interaction 2. Social Communication and 3. Repetitive behaviours/ insistence on

sameness What do you mean socialization?

Spectrum concept does not mean the presence or absence of one ability/ quality/trait- you can have it/ some of it /lots of it. It is not socialization or the ability to socialize; it is the quality and quantity of absence and presence is important.

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Slide 4.

There are few examples of a personality having a trait for example anger. Usually we call a person as an angry person, sometimes as calm person. But there are different situations that trigger that anger. You can not say that a calm person do not get angry. That’s another part of spectrum.

Slide 5.

Suppose there is a child who is aloof- sits in a corner does not interact, no consequence who approaches him.

Now moving on to the spectrum- passive i.e. sometime, at some occasions, some one catches him by hand and says now you come with me and I show you how to do it, its okay with him and he gets along passively. Then, there are of course these grey zones, where we might have an active child.

Slide 6.

Someone who does not know how to communicate/ interact i.e. some people are dis-inhibited for example, appropriateness in certain situations.

What about someone who does not understand where to stop, at all. Would do you say, that this person doesn’t understand the timing of socialization/ social communication. Doesn’t understand the appropriateness in certain situations, this is also a part of the spectrum that means the quality may e at one end or the other.

It is not about the absence or presence, it is about the qualitative, what is the nature of socialization, how does the child react in one situation.

Some children can communicate verbally but some doesn’t. Some can’t pick up the finer answers, remarks/ gestures? This is difficulty adapting to listener, this is inability to pick up social communication.

Slide 7.

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Lot of people are bothered by these. Actually a repetitive activity is not medically or otherwise harming the child. There is nothing that the child is being compromised. Somebody is doing gestures that you and I find odd, like a hand flap/ repetitive noise he is not finding it odd. There is a sense of comfort, sometimes it is to satisfy the sensory simulation, sometimes it is a habit as people say/stereotypic, but you and I are finding it odd and asking then to stop. Neither it has been ever clinically proven nor is such an activity harming the brain or the child. This is entirely a socially driven need to correct! You should have the understanding of the origin and the reason of it.

Slide 8.

The fourth domain, which is now increasingly being recognized and is essential, is imagination. We are usually taught that something is out of the ordinary, something that is beautiful, that’s what we talk about. When the child id little and is growing up, you try to help him imagine a consequence. For example you do this and then you get what you want! In a sense the child is developing the power or ability to hold the thought in his head. That is also the power of imagination. The child remembers that if I do this today, I will get the chocolate I wanted. This is the power to imagine and therefore delay and self gratification.

Slide 9.

This is one of the areas which are not developed. How does the child play? First is picking up the ball and throwing, then comes hide and seek and finally more complex plays such as playing making fake tea/ teacher-students act etc. If you change a consequence in a story or pay/act, autistic child cannot change, he can only copy/ make up on his own or change.

Slide 10.

An idea of difference of figure/ground relationship to pick up a part with in the whole i.e. detail and the whole, distinguishing the part from the whole, this drawing is sometimes used by us for assessment. Can you pick up the cube on the right with in this drawing? Chidren with ASD will pick up in a short time. The ability to pick up in detail and not as whole is ASD all about.

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Slide 11.

Can you pick up the horse?

Slide 12.

Can you pick up the expressions here- can you interpret that how they might be feeling? Feeling would be emotions behind it?

Children with ASD may have problem in interpreting these?

Slide 13.

This is about the essence of ASD might be.You can make a story from it.

Slide 15.

Child with ASD does not have the connections and will not narrate the story with emotion/ feeling and interpretation will be missing.

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Slide 17.

Child with ASD will not be able to interpret the picture whether the person is climbing or is he on top or bottom. ASD is similar to this picture where one cannot understand what is happening?

************************************************************************************************************************* 3. Autism Tool: Dr. Saroj Arya, NIMH, Secunderabad.

Dr. Saroj commenced with her presentation with complimenting the Chairperson National Trust for giving this opportunity to present the assessment tools for Autism. She also welcomed the distinguished guests and delegates.

Slide 2.

Dr. Kavita has very exquisitely explained Autism Spectrum Disorders (ASD). Autism is a developmental disorder characterized by impairments in socialization, abnormalities of verbal and non-verbal communication and restricted, stereotyped interests and behavior.

Slide 3.

ASD are considered as a group of neuro-behavioral syndrome. DSM-IV even the revised version and ICD-10 are the accepted classification system. It was on the Pervasive Developmental Disorders (PDD).

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Slide 4.

Basically, Autism is affecting all the triology of mind i.e. the cognitive function mainly the meta-cognitive and the executive function, thinking process. So it does affect the mind.

Slide 5.

In India, National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, promulgated in1999 refers to “autism” as a condition of uneven skill development primarily affecting the communication and social abilities of a person, marked by repetitive and ritualistic behavior pattern.

Slide 6.

Characteristics of Autism are Social reciprocity, social communication and repetitive behavior.

Slide 7.

So it does affect the mind:

• Cognitive- intellect • Conative- Action behavior • Affective- emotional

Slide 8. Epidemiology

Epidemiological studies of autism conducted in many countries show a marked tendency of increase in prevalence rates over time.

Research evidence suggests changes in definition, diagnostic criteria and improved awareness explain upward trend of rates in recent decades.

Slide 9.

• Male Female ratio amongst the persons with ASD is 4:1. • Autism can be identified by the age of three years. Slide 10. Screening Tools

Many tools are used to screen and assess the children with autism. • Childhood Autism Rating Scale (CARS) • Checklist for Autism in Toddlers (CHAT) • Autism Screening Questionnaire (ASQ) • Gilliam Autism Rating Scale (GARS) • Autism Diagnostic Interview Revised (ADI-R)

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• Autism Diagnostic Observation Schedule (ADOS) Slide 11.

The Ministry of Social Justice and Empowerment, Government of India constituted an Expert Committee comprising of professionals working in the field of autism and related developmental disabilities to develop an Indian tool for assessment of persons with autism for issuance of disability certificate.

Slide 12. Objectives

The main objective is to develop a simple tool for assessment of autism for issuance of disability certificate, so that persons with autism can avail benefits and concessions given by the Government.

Slide 13. Methodology

The tool was developed in the following three stages.

Stage I - Test construction Stage II - Selection of field centers Training to research staff Stage III - Standardization of the tool Slide. 14 Test Constructions

a. Item Pool An item pool consisting of 437 test items was developed based on items suggested by professionals and literature.

b. Item Selection Out of 437 , 70 items were short listed after validating by expert opinion from 30 professionals. Expert committee further scrutinized and selected 57 items.

c. Item Analysis A pilot study was conducted of 57 items on a sample of 52 (Autistic-32,MR-20) Based on the results 40 items were selected.

Slide 15. Indian Scale for Assessment of Autism (ISAA)

Slide 16. Description of the Scale

The ISAA is a rating scale comprising of 40 test items grouped under 6 domains. 1. Social Relationships and Reciprocity 2. Emotional Responsiveness 3. Speech, Language and Communication 4. Behaviour Patterns 5 . Sensory Aspects 6 . Cognitive Component

Slide 16. Test Administration

Standard Testing conditions Method of assessment

Observation Informant interview Testing

Standard Test material / Kit Testing time : 60 minutes

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Slide 17.

Each test item is rated on a five point scale:

1. Rarely 2. Some times 3. Frequently 4. Mostly 5. Always

Slide 18. Standardization of the Tool

The tool was field tested in the following ten centers representing different states of India so that the tool can be used across the country.

1.Composite Regional Center, Srinagar, J&K

2.RMLH, New Delhi

3.PGIMER, Chandigarh

4. Deepshikha, Ranchi, Bihar

5. Umeed, CDC, Mumbai

6.Composite Regional Center, Guwahati, Assam

7. Pradip, Center for Autism, Kolkata

8. NIMHANS, Bangalore

9. Vijay Human Services, Chennai

10. NIMH, Secunderabad

Slide 19. Training Programmes

Training programmes were organized for training of Research Staff to carry out field testing in different centers.

Hands-on-experience of assessment using ISAA was imparted by case demonstrations and discussions.

CD was developed on ISAA testing and given to research personnel for reference.

Slide 20. Research Design

The project includes three study groups:

Autism MR & others (ADHD, Psychatric illness) Normal

Slide 21.

A total sample of 120 was to be collected from each of the 10 field centres. The age range was between 3-20 years.

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Slide 22. Data Collection

Data was collected by trained investigators on a total of 1247 study subjects in ten field centers across the country. Table- 1 Total Sample Collected from Study Centres

1

2

3

Autism group

MR and ADHD group

Normal group

436

411

400

Total 1247

Slide 23. Tools Used

Childhood Autism Rating Scale (CARS) was used for establishing criterion validity of the present tool, Indian Scale for Assessment of Autism (ISAA).

Indian Scale for Assessment of Autism (ISAA)

CARS and ISAA were administered on the total sample (N=1123).

Slide 24. Data Validation

Data scrutiny was carried out to obtain valid data for analysis. Data was checked for any outliers and wrong entries. After cleaning of the data, 124 subjects were dropped from the total data because of incompleteness,

mismatching or any other such errors Slide 25.

There was a preponderance of males over females in the study population. This observation was markedly true in the autism group wherein, male and female ratio was 3:1. In autism group, majority (62%) of subjects was first born and 28% of them were in second born

category and remaining 10% had third and above birth order. Slide 26.

Analysis of data suggests that age and gender of autistic children had no effect on ISAA test performance. Similarly, the factors of age of onset, consanguinity, regression and presence or absence of family history of related disabilities had no impact on ISAA test scores.

Slide 27. Results of ISAA

Item total correlations were computed to obtain validity of each item in the scale.

Results show that all the items of ISAA were found to be highly significant at 0.001 level, except, one item viz. ‘savant ability’ which was significant at 0.05 level.

Hence the present results indicate that all the 40 items are valid and hence may be retained in ISAA tool.

Slide 28. Validity

Results of Mean values, SDs and ANOVA between the 3 study groups viz. Autism, MR & others and Normal group reveal that the Mean scores of the autism group (103.40) were found to be significantly higher than those of MR and others group (61.67) and normal group (42.46).

The mean differences were statistically significant (p<0.001).This signifies that ISAA clearly differentiates between autistic and non-autistic persons.

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Slide 29. Discriminant Validity

To determine the discriminant validity of ISAA between Autism and MR & others group, ‘t’ test was computed to obtain the mean difference between the criterion and control group. The value of ‘t’ test was 26.03 which was highly significant (p<0.001).

The results suggest that ISAA clearly discriminates between autistic and MR children. These findings are further confirmed using CARS.

Slide 30. Analysis of discriminant validity of ISAA between the Autism and Normal groups show that ‘t’ values were highly significant at p<0.001 level.

To confirm these results the means scores on CARS were compared between the criterion and controlled groups which were observed to be significantly different.

It may be concluded that ISAA significantly discriminates persons with autism from MR and normal population. Hence, the discriminant validity of ISAA tool is established.

Slide 31. Criterion Test Validity

The criterion test validity of ISAA was determined by comparison of total scores obtained on the tool with those on CARS.

Pearson Product moment correlation was computed and the resulting correlation r = 0.77 (p<0.001) reveals that ISAA has high degree of validity as that of CARS.

Slide 32. Reliability

Internal consistency Reliability. The internal consistency reliability of ISAA tool was obtained by computing Cronbach’s coefficient

alpha. The alpha coefficient obtained was 0.97 indicating a high degree of internal consistency of the tool.

CARS alpha coefficient was r=0.94. Hence, the present results suggest that ISAA tool has high degree of reliability.

Slide 33. Inter Rater Reliability

Inter-rater reliability was calculated using Pearson Product Moment Correlation between two raters who independently administered and scored ISAA on 67 randomly selected children which is about 17% of the sample

Inter-rater reliability coefficient of 0.83 (p<0.001) was obtained indicating significantly high degree of agreement between the raters.

Slide 34. Test-Retest Reliability

In order to assess test-retest reliability of ISAA, total scores from two separate test occasions were compared for 120 cases which constitute 30% of the sample. The correlation coefficient obtained was 0.83 thereby establishing temporal stability of the scale.

Slide 35. Discriminant Function Analysis

Discriminant function analysis was performed to determine the proportion of autistic, mentally retarded & others and normal children that could be correctly classified by ISAA.

Discriminant analysis of autism and normal control group revealed that it was possible to classify correctly 98% of autistic and normal children. The sensitivity was 96.3% and specificity was 100%.

Slide 36. Discriminant analysis of autism and mentally retardation & others group revealed that it was

possible to classify correctly 90% of the autistic and mentally retarded. The sensitivity was 88.8% and the specificity was 91.3%

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Thus results of discriminant analyses indicate a fairly high power of ISAA in discriminating autistic and non-autistic persons.

Slide 37. Sensitivity and Specificity

According to CARS, 30 is cut off score for diagnosis of autism. Using 30 of CARS as constant, the sensitivity and specificity levels were computed with different cut off scores on ISAA starting from 45 to 80 as given in the table.

Slide 38. Receiver Operating Characteristic Curve (ROC) technique was used to find out the cut off level which indicated that a score of 70 and above on ISAA can be used for diagnosis of autism.

With 70 as the cut off score, the sensitivity was 94.3% and specificity was 92.0%. The cut off at 70 also showed high and balanced sensitivity and specificity between the autism and normal children as well as between the autism and MR &other group of children.

ROC analysis confirmed discriminant ability of ISAA, AUC=0.931 with SE=0.009 at cut off 70. Slide 39. Norms

The total ISAA scores may range from 40 to 200, where in low score of 40 represents normal limits and a high of 200 indicates severe degree of autism.

A diagnostic categorization of ISAA has been established based on the ROC cut off score of 70. Using this cut off level, individuals falling below the score of 70 are categorized as non autistic while those with score of 70 and above are categorized as autistic.

Slide 40. Conclusion

Results of the present study show that ISAA is a standardized tool with good psychometric properties. It is a reliable and valid tool for assessment of persons with autism. Results indicate high concordance between ISAA and the gold standard CARS. Hence, ISAA can be considered as an effective tool for issuance of disability certificate for persons with autism in India

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4.The COM- DEALL Trust : Dr. Pratibha Karanth

Slide 1. Dr. Pratibha Karanth, Program Director, Communication DEALL based in Bangalore commenced her presentation with an introduction of Communication DEALL program, which is an intensive early intervention program that provides profile based intervention within a developmental framework for children with pervasive developmental disorders and other communication disorders, with the objective of mainstreaming as many as possible by school entry age.

Slide 2. Evaluations: Following methods of evaluations were given:

Expressive • Cognitive/Academic, Social & Emotional Additional • Sensory issues • Behavioral issues • Oro-motor skills • Pragmatic skills Slide 3. Common PROFILES

• Poor PLB • Severe communication delays – Rec vs Exp

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• Oromotor skills • Motor development – gross and fine • ADL – particularly toileting • Poor social skills. • Behavioral issues Slide 4. Additional Profiles

Sensory Perceptual Differences • Auditory, Visual and Tactile /Kinesthetic

Motor Issues • Imitation and Dypraxias

Behavior • Temper Tantrums • Self Stimulation • Aggression • Self Injury • Obsessions • Sleep Disturbances

Slide 5. Communication DEALL Developmental Checklists

Standardized eight checklists on 360 typically growing young Indian children in the age range of 0-6 years The Communication DEALL Developmental Checklists manual was released in December 2007. It should be noted that these manuals will not only serve the purpose of the DEALL program but can also be used for a much wider range of children with developmental disabilities 5 Slide. In the Phase II i.e. from 2007-2010, DEALL has produced the following:

• Materials Production • Toddlers manual 2007 -08 • Preschoolers Manual 2009 – 2010 • School Transition Module Slide 6. Intervention Manuals

• 4 Manuals for Toddlers covering • Motor development, • Language acquisition, • Alternate & Augmentative Communication and • Cognitive, Social and Emotional Skills to be released in December 2008 Slide 7. Wider Applications

Communication DEALL assessment framework and materials can be used for a range of children with developmental language disorders including those with cerebral palsy, mental retardation and hearing impairment.

Slide 8. An invitation to the National Meet December 2008 was extended by Dr. Karanth

Representatives of all those involved in the management of ASD and other communication disorders; such as, pediatricians, developmental neurologists, child psychiatrists/psychologists, speech-language therapists, occupational therapists, early interventionists, educators and other organizations which are already active in the area, are invited. The Communication DEALL program will be presented along with the evaluation manuals and the intervention packages for Toddlers.

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Slide 9. Oromotor Skills

Oromotor Kit contains- Jaws, Lips and Tongue Chewing, Sucking and Swallowing Brushing and spitting Voicing Speech

Slide 10. Pragmatic Skills

Basic Kit contains – Aspects of pragmatics such as greeting, requesting, maintaining eye gaze

Slide 11. Pragmatic Skills

Advanced Kit contains Complex aspects of pragmatics such as:

• proximity • stylistic variation • referential communication • turn taking • repair • revision • and closing a conversation

Slide 12. Dr. Karanth further showed a manual on Stories for Everyday Social Skills

Aimed at helping children to deal with behavioral issues that interfere in their everyday social interactions. For example not being able to wait for one’s turn

Slide 13. Proto-Vocabulary Books

• An introduction to AAC and to enhance early expressive speech. • To reduce frustrations consequent to inability to communicate.

Slide 14. “With a little bit of help”, an Early Language Training Kit is English & Kannada and publication of manuals in 8 other Indian languages is being processed.

Slide 15. In Progress is scheduled to be released in December 2008, which is an Intervention Manuals for Toddlers on

• Motor – Gross, Fine and ADL • Language – Receptive & Expressive • AAC

Academic and social • Parallel Talk

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• Stories for Everyday Social Skills • Oromotor Assessment • AAC aids

Slide 16. Dr. Karanth concluded with acknowledgements to the following:

• All of the children who enrolled in our program – we have learnt from each of them. • The staff of the Communication DEALL program – past and current. • Sir Ratan Tata Trust and • Navajbai Ratan Tata Trust, Mumbai

Website- www.communicationdeall.org

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Fund Raising: Maj. General (Retd.) Surat Sandhu started a very interesting and informative presentation on the importance of “Fund Raising” and its various ways.

Slide 1. He began with the aim:

• To share the Fundraising Scenario in India • Maybe Initiate, Educate, Motivate and Inspire you about Fundraising • My effort is to further strengthen National Trust & Partners Slide 2. What would anyone of you desire?

Slide 3. What would anyone of you desire?

Sustainability and Independence

Slide 4. If we need to reach a Sustainable and Independent State for National Trust & Partners

What should be Our Route?

Slide 5. If we need to reach a Sustainable and Independent State for National Trust & Partners

• Our Route: To promote our skills and knowledge about Fundraising • Charge our batteries

Slide 6. But first:

• Understand Fundraising • Know Principles of Fundraising • Know the Sources & Techniques • Essentials for Fundraising • Understanding the need for Case of Support Slide 7. Who are we?

There are three kinds of organisations: • those who make things happen; • those who watch things happen; and • those who wonder what’s happening.

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Slide 8. What is Fundraising?

Fundraising is not a science but an art.

“The art of getting people to give you what you want, where and when you want it, for promoting the work we do”.

Slide 9. Fundraising

• Understanding, defining and communicating all the dimensions of our need. • Inform, motivate and facilitate giving. • Engaging and involving our donors as stakeholders and investors. • Relationships based on shared values. • Impacts and results not financial targets. • Ingredients: Giving, Asking, Joining and Serving. Slide 10. Fundraising

Your ability to raise resources is a tangible manifestation of the strength of your relationship with your natural community of support.

Slide 11. Fundraising

Fundraising is a management process of identifying those people who share the same values as your organization and building strong, long-term relationships with them.

Slide 12. Fundraising

It is about an organization getting the resources that are needed to be able to do the work you have planned. More than just fundraising: – it is about getting a range of resources, - from a wide range of resource providers - through a number of different mechanisms. Slide 13. Why raise funds?

• Develop new programs, expand old ones. • Involve people with ourselves • Human needs increase: quantity & quality. • More money is required every year. • Competition for resources increases. • Resource base should be diverse. • Fundraising enhances credibility & status. • Fundraising opens other doors. Slide 14.

Major Sandhu further gave the figures from USA and UK wrt population in the year 2007.

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Slide 15. How much do we raise in India, not even a fraction of what is raised in UK and US. Our population is more than1.1 Billion and we raise < $ 1 Billion. Besides

• Government $ 1.75 Billion • Foreign (FCRA) $ 1.25 Billion • NRI’s $ 2 Billion Slide 16. Indian economy is the fastest growing economy in the world and a

• Upwardly mobile society • Large number of households with disposal income • 1,00,000 earning > $ 1 Million a year Slide 17. Over A Million High Net Worth Individuals– But No One Accessing Them

• State of the art mass communication infrastructure available • Fundraising Territory - almost virgin

Slide 18. He quoted from Sonia Gandhi “People who benefit from economic growth cannot be oblivious of their obligations to the state.” And then stated that there is a huge potential in India, a huge, upwardly mobile economy of more than $ 10 billion. He stressed upon this state of affair:

• Poor understanding of fundraising • No investment • Lack of strategic direction • Lack of training • Inadequate Professionally Trained Fundraisers • Fundraising not perceived as a CAREER option • Overdependence on government and foreign funding

This scenario is because there is only a small fraction of 1% of NGO’s have a fundraiser We Need- Quantity, Quality, Quickly, which is an Opportunity & a Challenge

Slide 19. As a South Asian fund raising group,

Our Vision A Civil Society Sector that is, Independent and Sustainable. Our Mission To provide state of the art resource mobilisation capacity building for fundraisers and Civil Society Organisations. Our Objective Train more than 2400 fundraisers in the next four years to have a cascading effect. Our multi-pronged strategy is:

1. Annual South Asian International Workshop, Agra 2. South India Regional Workshop, Madurai 3. Certificate Courses in Fundraising & Communication 4. Consulting/Mentoring NGOs 5. Master Classes 6. Association of Fundraising Professionals There are three important aspects of fund raising:

1. People need and want to give, yet many do not know: how to give, to give to whom nor how much to give.

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2. People give according to their means interests & inclinations, without pressure. Decision should be theirs.

3. Fundraisers focus on the mission not budgeted needs Solicitation is the simple process of taking a concern and sharing that concern with another individual.

Slide 20. Guiding Principles of fund raising are;

1. Fundraising is not about money. 2. Communicate the need. 3. People give to people. 4. Look for relationships and friends. 5. Your best prospects are your existing donors. 6. The Pareto Principle 7. You don’t get what you don’t ask for ! 8. Make it easy. 9. Test, test, Test. 10. Creativity and innovation. 11. Thank you.

Slide 21. Five income partners are:

• Individuals, • Companies, • Trusts/foundations, organisation • Statutory/government, and • Earned income

What can you get from your donors?

• Money • Goods • Time/expertise

He emphasized that more importantly you will get • Voice • Influence • Information

Slide 22. People give because:

• Invest in improving the community • Duty to give back to society • Hearts have been touched by the cause • Religion • Organisation does good work and will use their money responsibly • Expressing their gratitude • Recognition/In memoriam • People because they are asked!!

What do we see these days- its only adhoc fund raising.

Slide 23. Limitations with aids

• Given according to the donor political and commercial interests, often with strings attached • Breeds dependency and is not sustainable • Does not build local support for causes • Competition for funds is increasing • Creates a wrong perception

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Why is the need for Local Resource Mobilization (LRM) • Diversify. • Need to sustain and expand work • Independent of donor interests • Organisations become careful about spending and work

more efficiently-Accountability • Public becomes more aware of social problems • A supporting public can become a campaigning force • Transparency and increased communication help change

public scepticism about civil society organisations Slide 24. Challenges to LRM

• Public is unaware of social issues and needs • Public is sceptical about civil society organisations • Boards and leadership unawares • Boards and leadership are seldom actively supportive • No professional fundraisers with skills • Organisations are reluctant to allocate resources for investment Slide 25. Above all:

• PLENTY AVAILABLE • Low hanging fruit • Go pluck it, but first, learn the art to optimize Slide 26.

Techniques of Fundraising Individuals - Direct Mail - Major Gifts - Face 2 Face - Events - Legacies - Volunteerism - New Media Slide 27. Techniques-corporate

♦ Sponsorships ♦ Pay roll giving ♦ Cause related marketing ♦ Project support ♦ Charity of the year ♦ Philanthropic gifts ♦ Corporate social responsibility ♦ Staff support/Employee involvement Slide 27. Techniques

• Trusts, Government and Agencies - Proposal Writing

• Income Generation

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- Sale of products - Fees - Services

Slide 28. Which techniques?

• Visibility • Resources • Cost • Staff/skills/Team/K • Infrastructure • Cause/competition • Life stage/strengths • Communication/brand • Technology • Sustainability • Growth/risk • Leadership support • Scalability • Diversify • Restricted Funds • Interesting • M & E

Slide 29. Avoid being overly-dependent on any single source. Build in a good mix of income sources in your fundraising strategy. Slide 30. It won’t work here ‘syndrome’ Slide 31. Success in Fundraising-1

• A systematic and planned approach • Investment in staff and support • Investment in building relationships • Patience combined with action • Readiness to listen

Slide 32. Success in Fundraising-2

• A strong and exciting case for support • Urgent and compelling needs • Realistic and potential donors • Strong internal and external leadership • Readiness for fundraising

Slide 33. Good fundraising rests on four foundations- case, leadership, prospects and plans Slide 34. Case for Support “The case is an expression of the cause, or a clear compelling statement of all of the reasons why anyone should consider making a contribution in support of or to advance our work.” “It tells all that needs to be told, answers all the important questions, reviews the arguments for support, explains the proposed plan for raising money shows how contributions may be made, who the people are who vouch for the project, and who will give it leadership and direction.”

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Slide 35. What NT ought to do? Set up a FR department

– VMG exercise – Strategise – Need to have an external

Advisory Board – Recruit and Build Capacity of

Fundraisers – Plan – Invest in FR – Implement

Create and Promote its Brand Partners - Build fundraising capacity - Guide wrt Fundraising Slide 36. Points to ponder

People don’t give money to causes, they give money to people with causes People give money to success not to distress Always say thank you Resources are a means to an end – the mission You need money to raise money No quick fixes: fundraising is a long-term process whose rewards come with time

Slide 37. Remember- Fundraising is not only about money. It’s about friend-raising and relationship-building. Also- Money is not given it has to be raised Money is not offered it has to be asked for Money does not come in, it has to be gone after Slide 38. Are you ready?

• Are you well Governed and Managed? • Do You have a strategic plan? (Vision, Mission, Values and Strategy) • Are you clear exactly what you want and for what? • Can you demonstrate results? • Can you provide the donor with what it requires in return?

Activities do not make money, Achievements do!

surat21@gmail.com (M)9810139447

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Spell bound audience captivated with Major Sandhu’s presentation on fund raising ***********************************************************************************************

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New Technology for PwDs - Shri Anil Joshi, IBM - Dr. Ashish Verma, IBM - Dr. Om Deshmukh, IBM - Mr. Nitendra Rajput, IBM Mr. Mohanti welcomed the IBM team and Mr. Anil Joshi, who is also a board member, National Trust with presentation of flower bouquets. Shri Anil Joshi introduced the new projects on web accessibility by the IBM India research team, with three young persons Ashish, Om and Nitendra. He reflected that in IBM their team has been in a position to leverage the technology to make the information accessible equally to anyone who needs it and at a very affordable cost. I request Om to make his presentation which will help you in taking some ideas back home. Om: I will talk about the four different technologies we have.

Easy Web Browser is software for persons with learning disabilities, hearing impairments and vision impairment. In a website there are too many images, frames, fashion materials, etc. What this browsing material will do is to:

• highlight the text, • it can change the colour contrast for persons with low vision, • can read out the text for persons with vision impairment, • zoom the text and the images • you can control not just through mouse but through key board, • it is very relevant to the Indian scenario to people who are non-tech or computer savvy

A video of the demo was shown with the President of India’s web site.

Hindi Speech Recognition- another technology to suit Indian audience is where the software will online transcribe or write down what ever you are saying in Hindi in Real Time. • Real time automatic speech to text conversion • Provides options for editing the text • Enables voice driven interaction between PwDs and computer • Successfully demonstrated various government hosted seminars • Licensed by CDAC to transcribe Parliamentary speeches

There are many applications such as a teacher is giving a lecture in class rooms it will online transcribe it and send to a wider audience. Another practical example would be to use this in ATMs- talking ATM.

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Nitendra – presentation on telecom

Spoken Websites: Bridging the digital divide “We are working on another technology called world wide telecom web. As the name suggest it will be completely on the telecom network target for the people in the developing countries, so people can use the telephone and have access to World Wide Web.”

- 17% of world wide population does not have access to a personal computer, therefore now mobile phones should be able to access the mobile web through telecommunication network. People, who have low level of literacy and simply have the ability to use the mobile phones, can use it for legal, health, social and other services. In next five years number of mobile phones used by the public where be much more than the number of PCs.

- This can be used in the rural areas. For example there is a village entrepreneur who has all the information about the village. Simple information like what is the train timing, store in the market and so on. He dials into a web site similarly there will be voice information. Persons with vision impairment can use such services significantly.

- You can perform transactions on this spoken website. For e.g. a plumber can create a spoken website for using his services, therefore some one can create an appointment and this person can get access to all the appointments and perform the service. Hence, mobile phone can serve the same web browser instead of using a PC/laptop.

- This new project is being run as pilot project with Blind Relief Association and National Association for the Blind; to access those web sites, which they were unable to access earlier.

Ashish

Web Access through Voice

“Most of us access our daily transactions such as bank, depositing bills etc. through websites. At times you are not able to use the website irrespective of you can use the computer or not, where in our technology helps you to find the solution to access the website and make transactions like bank accounts, trains, flights, anything.

I will give a brief demo. For example I am looking for a cheapest fare from Delhi to Bombay and find out the same through the website. Instead of reading out the entire website, this technology helps to extract the required information only.”

Interesting questions followed the presentation such as what is the cost of these technologies, are thee ready to be used, where all these can be applied etc. Mr. Anil Joshi replied to these questions.

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Valedictory Remarks

Ms. Poonam Natrajan, Chairperson, National Trust

We want to take this opportunity to bring the next features together, because I believe that knowledge is spark and sharing knowledge is progress. I just want to say a big thank you to all of you and many thanks to all the speakers. Most of the speaker’s topic would have taken more than a day and everybody got very short time but I think it was a quick glimpse in so many aspects of our field. Dr. Amiata Dhanda and Mr. Gafos who spoke about the UNCRPD, they touched upon legal capacity, I think we need to take this discourse further, think about it and many thanks to them. I think we need to make changes in our own work. Thank you to Dr. Tehal Kohli. When I started working, portage was the first system of assessments that we learnt and it’s been there always. Now it’s in India. Everyone has their own assessment tools and I think Portage is a very good training programmed in the country. Thanks for your presentation. Dr. Kavita Arora thank you, it was brilliant to have you with us. Everybody learnt a lot on understanding the spectrum, as to what does that mean. Thank you so much! Dr. Arya spoke on Autism tools and we hope it will be notify very soon. Thanks you. Dr. Pratibha Karanth, thank you as you have got whole lot of material that she has developed and in December they are having a training programme. We want lot of organization to join on 2day programme scheduled for 12th & 13th of December. I want to conclude by thanking Major Sandhu. I hope that there is still a huge need in our sector to raise funds and how do we go about doing this. There has been many fights like Mallika Banerjee is sitting right there and last fight was with her on a Sunday afternoon when she said “What is this? Give us the money, if you don’t give us money, what are you doing?” I said you come and I will get you to Sandhu. I think fund raising is good as National Trust obviously cannot support every programme. We need to develop professionals for fund raising. As Sandhu say we need to sell our work. Thank you to our knowledge partners the Mr. Anil Joshi and IBM team. So it’s been a great day as atleast I have enjoyed every minute listening to all the speakers and meeting with so many people, all our stake holders of the country. Thank you for being with us and hope to meet you tomorrow again here. On behalf of National Trust thank you. Shri Atul Prasad, JS&CEO, National Trust

I will simply add a few points. Once you go back please think over all the issues that we have just heard here and if you have any questions, any doubt you put it on the paper and give to us tomorrow when you come for the AGM. Please also mention, question is addressed to which resource person. You collect all such query and pass it on the resource person we will collect the reply and pass it on to you back. We are also trying to document the entire presentations over here and we will come out of a good document as a project report sort of thing at the end of this month. We will put it on our web site also. Please do not apply for fund raising technique on National Trust, apply on others. Thank you.

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Documentation and transcribe

Ms. Anjlee Agarwal Executive Director, Samarthyam

www.samarthyam.org

Photography and recording Mr. Debabrata Chakravarti

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Contact details:

National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities, (Ministry of Social Justice & Empowerment) 9th Floor, Jeevan Prakash Building, Kasturba Gandhi Marg, New Delhi-1 10001 Tel: 43520861-64, 23766898-99 Fax: 23731648 Email: nationaltrust@nic.in Website: www.nationaltrust.org.in